Life Altered by Multiple Chronic Illness Diagnosis

Chronic illness has completely altered my life. I went from a two sport varsity athlete in high school to a person who functions at a pain level that would leave most people bedridden. Now life has been consumed by handfuls of pills twice a day, at least one doctor’s appointment a week, constant pain, exhaustion, and more difficulties. After struggling for over a year to get an accurate diagnosis I finally ended up with several: Rheumatoid Arthritis, Sjogrens Syndrome, Graves’ Disease, Fibromyalgia, and Irritable Bowel Syndrome.

Seeking Sobriety and Answers

I can’t tell you when the pain started. I spent years as a full time heroin addict, and while I was using I wasn’t in pain. But every attempt to get sober left me in agony even after withdrawing from the drugs; which only lead to relapse after relapse. Every attempt at sobriety would lead me to a different doctor for an answer, but every doctor assumed it was Post Acute Withdrawal Syndrome. I knew in my heart there was something seriously wrong, but I couldn’t find anyone who believed me. Eventually I managed to get sober and continued my fight for an answer to my pain. Every doctor I saw just assumed I was looking for drugs, even when I told them I didn’t want any narcotics. I went from doctor to doctor looking for someone who believed me and would help me finding an answer. I finally found one, over a year after I began my search. A few months later I got my answer. It came with a laundry list of health problems.

Chronic Illness Diagnosis Too Much to Bare

A few weeks after getting diagnosed with fibromyalgia and rheumatoid arthritis I landed in a mental hospital for a suicide attempt. I was so overwhelmed by the idea of dealing with pain everyday for the rest of my life that I assumed I couldn’t do it. I didn’t really want to die, I later realized, I was just afraid of a life of constant pain. Fear is a completely overwhelming emotion and I was terrified thinking of the kind of life I was being forced to live.

Struggling to Stay in School

Throughout all of this I struggled my way through college. I am currently studying the prerequisites to get into the nursing program. Just this past semester I developed a serious infection that was sensitive to only five antibiotics. As it turned out I was allergic to four of them. I spent weeks covered in a rash because of constant allergic reactions. I ended up with a PICC line to take the final antibiotic that would work, which was only available as an IV antibiotic. It took three weeks on that medication to heal. Thankfully it worked and I was finally free of the infection. But throughout all of that keeping up with classes wasn’t possible and one had to be dropped.

Immunosuppressant Therapy for Chronic Illness

Once I was free of the infection I could start my treatment for the Rheumatoid Arthritis- it was an immunosuppressant. This medication, which is also used in chemotherapy, makes me sick for at least one day, usually two. Once I realized this fact my mental health took another turn for the worse. This time going to the hospital was not an option. It was only a few weeks away from finals and past the date to withdraw from the class. The doctor upped the antidepressant which caused suicidal thoughts. I decided that if the next change my doctor made didn’t help I would take my parents wrath and go to the hospital for help. Thankfully the change the doctor made worked. I was no longer suicidal. The depression remained as a hard consequence of chronic pain.

Looking for Positive Side of Chronic Illness

Everyday is a struggle to keep looking for the positive when it all feels negative. Sometimes I think the light at the end of the tunnel is just a train that’s going to hit me at full speed. And sometimes that is what it feels like. But I searched for a group of people who understand the kind of struggles I have. Thankfully I found a few and began to make friends with others who have similar challenges. I began to talk to my family members who also struggle with chronic illnesses. I created a beautiful new relationship with my mother who struggles with almost the exact same situations as me. Anyone can find help through The Unchargeables Chronic Illness Support Group.

Chronic Illness Self Care

I realized that I can’t look at my whole life at once but instead I now try to take it a day at a time and go easy on myself. I can’t control what may or may not happen in the future, but I can control what I do today. And today I choose to allow my doctors to attempt to put my body back together while I focus on what I can do to better myself. I do what’s put in front of me: run the errands, study, go to appointments, and on and on. When things get overwhelming I do some self-care. It’s hard for me to do self-care because I tend to forget about it with everything else going on. I love taking baths and writing poetry and that’s what I try to do as often as possible. Life is still hard, but every day I do something, even if all I can do that day is get dressed. I’m grateful that today I have people in my life who understand my struggles and love me through them.

About the Author

Chris Thoman is 23 years old, a college student, and lives with several chronic illnesses. He loves meeting and talking to new people, especially those who struggle with similar things as him. You can follow Chris on Instagram at https://www.instagram.com/foreverandalwaysarebel/

I’ve been diagnosed with cervical dystonia, a neurological movement disorder, since 2010. As an extremely disabling condition with sometimes relentless chronic pain, it’s had a tremendous impact on just about every area of my life including limiting my driving abilities, my capacity to work and to be able to take my son with special needs, to some of the extracurricular things I’d like to see him be able to participate in.

“As an extremely disabling condition with sometimes relentless chronic pain, it’s had a tremendous impact on just about every area of my life.”

I’ve been diagnosed with Irritable Bowel Syndrome for years and figured that every quirky GI symptom I’ve had was just the IBS acting up. But for the past few months the more distressing symptoms were intensifying and I was noting more blood in the toilet when I went to the bathroom.

As a special needs mom of three, one of whom is a heart patient, I’m pretty good at doing research. So naturally, I started Googling “Inflammatory Bowel Disease” and started to wonder if that was what was going on and scaring the daylights out of myself in the process.

Finally, I went to the gastro in January, who ordered a colonoscopy. I procrastinated about getting that procedure done for a few months and finally got that done in April of this year.

Well.

For some reason the prep didn’t seem to be going as well as previous times. When I came out of the procedure, the doctor told me that the prep was indeed poor, and that I had colitis but they’d have to do biopsies in order to confirm what type it was. The doctor didn’t think anything major like cancer was going on.

Afterwards we stopped for breakfast at one of our favorite places just like we’d done in the past. I ordered some food, but then I began feeling horribly nauseous and couldn’t eat. The nausea became overwhelming and then I lost consciousness in the restaurant in front of my husband. A retired law enforcement officer, he started trying to give me mouth to mouth right away. Luckily there were some medical personnel from the local hospital there too and they called an ambulance.

“I lost consciousness in the restaurant in front of my husband […] he started trying to give me mouth to mouth right away.”

I spent several hours on ER having vitals checked as well as an EKG. I was super nauseous for several hours and couldn’t go to the bathroom by myself for awhile. My vitals all checked out as normal, but every time I tried to stand up the nausea came back. They gave me some meds or that and when it finally seemed to be under control, I went home to rest.

The doctor told me that it didn’t matter what I ate, but again… special needs mom that I am, I question standard medical advice. Also, I’m pretty holistically-minded about everything. I knew about the Gaps diet and was able to source a few things immediately. Something about being told my colon was “oozing” was very motivating to get started right away!

I’ve already begun to see some slow improvement but I understand that this is a major lifestyle change. I’d already made lots of changes over the last couple of years including a 40 pound weight loss and a food plan that was comfortable for me. But now I’m having to make more changes. I miss my morning oatmeal, coffee, and other creature comforts that help to keep me sane.

“30+ years of sobriety, being a special needs mom and living with another chronic illness have helped me to develop a self care arsenal that keeps me grounded through anything that life throws at me.”

Checking in with my mindset about everything, although I complain about the food restrictions on the Gaps diet, I think I’ve handled it all relatively well. 30+ years of sobriety, being a special needs mom and living with another chronic illness have helped me to develop a self care arsenal that keeps me grounded through anything that life throws at me. For me this looks like daily devotions, meditation, yoga, and writing. A little dark humor and sarcasm goes a long way too. Unfortunately that list also used to include a good cup of coffee, but I guess that’s out for now until I’m more stable.

I’ve learned that my life’s journey is a marathon, not a sprint. Sometimes there’s going to be awful days. Situations that I’m totally powerless over. At times like these it’s perfectly okay to lay low and focus on what I need to.

At this point I haven’t had the follow up with the doctor or got the lab results back. Honestly, I am a little anxious about it after doing some research and seeing the the possible treatment options are, how invasive they might be, how much is this going to cost and how cooperative will my insurance company be?

“I’m being proactive about what I have to do, taking it one day at a time and giving myself lots of grace to get through this.”

But believe it or not, it isn’t consuming me like it might have at one time. I stay busy with my blog, my dogs and my self-care practices in order to stay grounded. I’m being proactive about what I have to do, taking it one day at a time and giving myself lots of grace to get through this.

Marya Mesa is a special needs mother who writes at www.ChronicMomLife.com about chronically sober living with faith, intention, & self care.

Hi my name is Stacey, this is my story of life with adenomyosis. 18 months after having my second child(at 21 years old) I started getting heavy periods, not just the usual heavy, but to the point I was sitting on the toilet for half an hour as I was too heavy for sanitary towels or tampons, shooting pain during and after sex(with awful cramps) and spotting after sex too. I had scans and blood tests and nothing was showing up. I ended up having the mirena coil, then after A year my partner and I decided to have a 3rd child. After having our little boy, my periods seemed to never stop, I was heavily bleeding 21 days at a time with a 4-5 day break! The pains could throw me to the floor. I had a feeling it was endometriosis as I’ve heard so much about it. Anyway, after going for yet another scan they see that I had thickening of the uterus wall. Which led to my diagnosis of suspected Anenomyosis. The problem with Adenomyosis is that the only true diagnosis is a hysterectomy! You need a very good sonographer who is trained in what to look for to be able to diagnose this disease. Luckily 2nd time around I had one. I am currently on the mini pill and this is helping with my periods (now every two weeks at 5 days long but I’m happy with that after what I’ve been through!) but the pain is just as bad. I also have IBS which from what research shows is very common with Adenomyosis.

Adenomyosis was originally called Endometriosis interna which means endometriosis inside the uterus. The only issue with it being inside, is there is no cure other than hysterectomy. No way of getting rid of all or some the nasty symptoms the only choices are the pill, mirena coil and trailing injections. Being 23 I am not allowed to make that choice of a hysterectomy. Even with 3 children and deciding we have completed our little family. I am constantly tired, run down and in pain, but this is not enough for any surgeon to help me so young. This disease can start at early teens the start of your menstrual cycle or after you’ve had children or even surgery. Unfortunately not enough awareness or research is out there to say for definite what causes this. All we know is if you have this, you’re likely to have endometriosis too. I only know so much, I’m sure I have missed out an awful lot so please bare with me! I was diagnosed only a few months ago after years of hell, so still have a lot to learn. I just hope, I can raise awareness for this debilitating disease that ruins so many women’s lives.

My name is Heather, and I am currently 30 years old. I suffer from Chronic Pelvic Pain, some chronic bilateral knee pain, IBS-C (C for constipation), migraines, and worst of all, Chiari Malformation. My Chiari is not formally diagnosed yet, but the MRI evidence and symptoms are there.

My Chronic Pelvic Pain started when I was still 26 and still Active Duty Army. No cause was ever found, despite extensive work-up. My knee pain also started in the Army while I was 22. My right knee has a partial ACL tear, and my left knee has some early degenerative arthritis, but that didn’t start until 2 years later. My IBS and migraines started in my teens. My Chiari symptoms likely started in the summer of 2013 when I was around 28 (my birthday is in the middle of summer).

My migraines weren’t responding to Excedrin as well as they did before, but it wasn’t until after I was medically retired in early 2014 that I had imaging done on my brain and the cerebellar tonsillar ectopia was found. They haven’t diagnosed is as Chiari Malfomation because most medical providers still go strictly by the old measurement criteria. I finally got my doctor to put in a referral for me to see a specific specialist, so hopefully I can find better treatment options.

I still try to do what I can despite my symptoms, including fun things like attending a Like A Storm concert last night. I knew what to do ahead of time so that I could enjoy the whole night… and yes, I do have a jar with spoons in it on one of my necklaces there. I also made a small poster for the concert last night too. Didn’t hold it up, as it was a small venue, plus I don’t care for too much extra attention, but I did at least get my husband to take a pic of me holding it up before the show.